REMARKS to the 2003 ANNUAL EDUCATION CONFERENCE of the CALIFORNIA CENTRAL COAST ALZHEIMER'S ASSOCIATION
Hello. My name is Morris Friedell. I am 63 years old. I was diagnosed with Alzheimer's Disease at UCLA in 1998. On behalf of all persons with dementing disease I'd like to welcome all of you--patients, care-partners and professionals--to this Conference and thank you for being here.
Here's a little of my background. From 1969 to 1994 I was a sociology professor at UCSB. I sometimes taught a course on The Social Psychology of Affliction, where I discussed the challenges faced by persons diagnosed with catastrophic illness--but I never thought such a thing would happen to me. I retired in 1994 because I wanted to do something different, not because I had any fear that my increasing forgetfulness was anything more than normal for a person in his fifties.
It was not until late 1997 that forgetfulness, inattention, and difficulty following conversations pushed me to make an appointment with a neurologist. But neither he nor the neuropsychologist I was referred to thought I had anything serious. However, I began to search the Internet, and found with consternation that my symptoms were significantly like the beginnings of frontotemporal dementia. I asked my neurologist to order me a brainscan. The MRI showed frontal atrophy, and then professionals began to take me seriously. I was referred to the frontotemporal dementia clinic at UCLA--Dr. Chow there ordered a PET scan, and to her surprise it showed the Alzheimer's rather than the FTD pattern. (I want to note that later my symptoms became more consistent with Alzheimer's and less with FTD.) The moral of the story is that it's hard to get a diagnosis if you're middle-aged and your symptoms are not exactly typical.
I gradually began to study brain injury rehabilitation. Why was there hope for well-insured young persons injured in motor vehicle accidents, though they might be far more forgetful than we--whereas we persons with early AD rarely received more than what has been called "hospice in slow motion"? I learned how persons with brain injuries could relearn the activities of daily life by systematic ways of taking them slowly, with a larger number of easier steps. Rehabilitation could be slow and effortful, but nevertheless its pace might outstrip the comparatively glacial progress of dementing disease.
Now, five years after diagnosis, I feel my hopes for the power of rehabilitation have been confirmed. As I wrote on my website: "I have come to believe that rehabilitation can have a powerful effect on a patient's quality of life, allowing him or her to regain much lost ground and then maintain for years. What is needed is not an expensive institute, but some concepts which are not too complicated, the support of a good friend or psychotherapist, and lots of hope and hard work." I'm proud that Dr. Linda Clare, perhaps the world's top researcher in dementia rehabilitation, quoted these words in a forthcoming book. I can't go into the technicalities of, say, memory rehabilitation here, but I do want to say that the simplistic idea of treating the brain as a muscle and doing mental calisthenics is not helpful. That would be like a golfer trying to improve his game through weight-lifting. Books I've found useful are in the handout.
My last neuropsychological testing, a year ago, showed no clinical dementia, in contrast to the clinical dementia rating of 1 I got in 1999. This reflects that I've recovered the ability to remember where my car is parked without making a map. On the other hand, I'm really slowed down, and last year's PET and MRI continue to indicate Alzheimer's pathology. To read a popular novel sold in a supermarket takes an effort like studying a college text in an unfamiliar subject would. I have to completely write out a talk like this, rather than speak from notes and think on my feet. My wife, whose right hemisphere is relatively normal, has to explain TV dramas to me. And, of course, my future is clouded. In a way, my position is like having cancer in temporary remission. I'm conscious that my days are numbered (as the Psalmist said) and challenged to make the most of them.
More about my life: I have two children and six grandchildren. Internet communication has been very important to me because it doesn't require the speed and memory demands of normal social life. I cofounded the Internet-based Dementia Advocacy and Support Group, DASN International, and there last year I met Andrea, who is in the same leaky boat. I moved to Houston and married her. We are both romantics who think outside the box.
When I was diagnosed with AD I lived here in Ventura, but it took me quite a while to get up the nerve to contact the local chapter of the Alzheimer's Assn. I'm am so glad I finally did. Sue Tatangelo and Sandra McMullen (the former program director) were wonderfully supportive, and being on the education committee allowed me to help others while helping myself.
Let's see--what further message can I give you in 10 minutes? My perspective on dementia is that the psychological trauma of catastrophic illness, combined with negative or patronizing attitudes in the person's environment (or the fear of these attitudes, or both), leads to a chain reaction of "excess disability." That is, disability which goes far beyond that directly caused by neurology. For example, a person with mild dementia might be unable to find a common word, get frustrated and embarrassed, and therefore completely lose his train of thought. One patient wrote: "I worry so much about using the right words and saying it right that I forget what I was trying to say." So a positive and accepting mental attitude can do a lot to minimize the effects of neurological impairment.
One classic approach to developing a positive attitude in catastrophic circumstances speaks of three stages of recovery. The first stage is "safety," and this is very much what an early-stage AD support group cares to provide. Here's an example of support group dialog from Robyn Yale's pioneering book:
Mr. J: Iíve been thinking about how things might go for me. Do any of you ever worry about what will happen if you get worse?
Mr. R: I sometimes wonder what it would be like if I become unable to speak.
Mr. H: Well Iím concerned about those things, but I try not to dwell on themÖ. I feel good now, and I take each day as it comes.
Mrs. T: Thatís a smart way to look at it. After all,we have to go on living.
In a safety group like this painful fears are uncovered, they are validated, and then they are put away. By contrast, Tom DeBaggio in his book _Losing My Mind_ wrote that the one thing he could never forget was that he had Alzheimer's. He could perhaps have benefited from a safety group--because one goal of a "safety" group is to empower a person to forget at times, and thus be able, as Mrs. T said, "to go on living."
The second, "catharsis" stage of recovery, which is used to help persons dealing with cancer, rape, or combat trauma, but rarely for persons with Alzheimer's, is to fully face reality and experience its attendant pain--in the hope of ultimately breaking through to something beyond.
In line with this concentration camp survivor Victor Frankl wrote in _Man's Search for Meaning_,: "We refused to minimize the camp's tortures by ignoring them or harboring false illusions and entertaining artificial optimism. Suffering had become a task on which we did not want to turn our backs."
Similarly, Martin Luther King preached: "Place your failure at the front of your mind and stare daringly at it. Ask yourself, how may I transmute this dungeon of shame into a haven of redemptive suffering?"
In the catharsis stage, what Frankl called the "greatest of courage, the courage to suffer" can be followed by defiant dramatic affirmations, for example, saying with Job: "I will hold tight to my innocence; my mind will never submit!" Or declaring with W. E. Henley, facing the possible amputation of his second leg, "It matters no how strait the gate, how charged with punishments the scroll, I am the master of my fate, I am the captain of my soul.
The final stage of recovery is to choose a "survivor mission." One heals oneself through contributing toward healing the world. For example, we in DASNI struggle for the dignity of all persons with dementia, or pwids as we call ourselves. We are proud to announce that one of our members, Christine Bryden of Australia, diagnosed with dementing disease in 1995, has just been elected to the board of Alzheimer's Disease International, the first pwid to be so honored.
One of our goals has been to get Alzheimer's associations to be inclusive of persons with dementia, and ADI, Alzheimer's Disease International, the global umbrella group, has beautifully responded. We continue to strive to make the U.S. National Alz. Assn. more pwid-friendly. For example, it would be nice to see a few pwids on their paid staff, say as Internet chat-hosts or on the helpline. Think: what message would the NAACP be sending if it had no black persons on its staff? What message would NOW be sending if it had no women on its board? If these words trouble you, use your memory to not forget your concern.
In conclusion, I'll say more about how I apply the three stages of recovery to my own life. Regarding "safety," I can take refuge in Buddhism, with its serene acceptance of impermanence and its awareness that the self is an illusion. So the dreaded loss of self in Alzheimer's is, in a way, just the loss of an illusion. "This existence of ours is as transient as autumn clouds, " said the Buddha. To understand this is to be at peace.
Music also helps. Recently I've come to like smooth jazz--before AD I felt it was too tepid and mellow. In general, I think AD has made my feeling for music purer, with less background noise in my mind.
Regarding the catharsis stage of recovery, an example of a dramatic affirmation that helped me was a presentation Christine Bryden and I gave at the 2001 Australian Alzheimer's Conference. After reading my PET scan report I stated: "Our brain scans symbolize the moment of diagnosis, when our lives changed forever. By giving this talk, and functioning in this context, we are challenging the view that the person with dementia must lack insight, ability, or judgment." I went on to declare: "The toxic lie is that our abnormal brains make us biologically inferior. Haven't I heard about "biological inferiority" somewhere before? The Nazis... the Holocaust... We won World War II didn't we? Didn't our fathers fight for a world where persons are no longer judged by some concept of biological inferiority?" Thus I was affirming that the real shame is not in having a disease, but rather the real shame belongs to those who perpetrate prejudice and stigma.
Finally, as a dementia survivor, I can continue to work with quiet dignity on my life-tasks as long as I am able. I want to bring hope to others, as others have brought hope to me. I have read how those in the Warsaw Ghetto, a far worse situation than mine, lived with hope and died with dignity. I have learned from them. I have also found a role-model in Jeanne Lee, a Director of DASNI who has been living with an AD diagnosis two years longer than I, and has recently published a wonderful book. Her courage helps me face the challenges ahead. She writes, "Having regressed in life from management positions to caregiving to housekeeping gets me down sometimes, and I know I'm continuing to go downhill" but she nevertheless affirms her determination to keep on doing the best she can. Like me, she considers herself spiritual rather than religious, and declares: "To me, life has become as simple as the choice I make in the moment. Do I want to live this moment in love, or in fear? The choice is mine."
In 2005, when I am as far post-diagnosis as Jeanne, I'd like to have an attitude as positive as hers.
Christine Bryden, Who Will I Be When I Die?
Jeanne Lee, Just Love Me: My Life Turned Upside-down by Alzheimer's
BRAIN INJURY--PERSONAL NARRATIVES
Claudia Osborn, Over My Head
Kara Swanson, I'll Carry the Fork!
Linda Clare, "Cognitive Rehabilitation for People with Dementia," forthcoming in M T Marshall (ed.) Think Rehab,
Linda Clare, Rehabilitation for People with Dementia in B A Wilson (ed.), Neuropsychological Rehabilitation: Theory and Practice,
Linda Clare and Robert Woods (eds), Cognitive Rehabilitation in Dementia
Morris Friedell, "Dementia Survival--A New Vision (A version is in Alzheimer's Care Quarterly, April-June, 2003.)
Morris Friedell, "Potential for Rehabilitation in Alzheimer's Disease
Morris Friedell, "Tedious No More!" forthcoming in M T Marshall (ed.) Think Rehab
G Prigatano, Principles of Neuropsychological Rehabilitation
Christensen and Uzzell (eds.) International Handbook of Neuropsychological Rehabilitation
Johnson and Stonnington (eds.) Rehabilitation of Neuropsychological Disorders
A M Battro Half a Brain is Enough